WordPress informed me that in July I hit eight years blogging here at “OCD in the Family.” Unreal. It gave me pause to think back a bit (oh, and also to update my “About” page). I remember where I was when this blog was born. Blake had just turned 14. Michael was 16. And I was in a place where I felt powerless to help my treatment-refusing son, to be a good mother to both of my teens, and to have a healthy marriage and family life. Now my boy are both young adults, trying to find their way in this world.
Over these years, the blog has evolved. It has shown our ups and downs, it’s grown to cover the topics of depression, suicidality, hospitalization, treatment, and life as a therapist who specializes in Obsessive-Compulsive Disorder and anxiety disorders. I’ve learned much – and my learning continues.
One very special thing over the years has been the connections I’ve made with readers. Some are fellow bloggers who I’ve actually gotten to meet in real life, others are regular commenters who I’ve grown so fond of over the years, some comment from time-to-time or only once, and others leave a “like” or just their imprint in my daily stats. However you’ve been here, reader, I am so grateful that you chose to stop for a moment and visit with me.
I plan to continue to share our family journey, wherever it goes. I’m honored if you come along.
There is a lot written about Obsessive-Compulsive Disorder and religion. Heck, some of the earliest recognized forms of OCD were in religious circles: people who were constantly in confession, people who said prayers over and over until they got them just right. At conferences and workshops I’ve attended on OCD and religion, the guiding principal has been that one must respect a person’s religious values and practices, while helping them to separate out that part which is OCD. What, however, is to be done when being religious is all about OCD in the first place? Let me explain.
Blake became religious about six years ago. Our family certainly identifies with our religion. We celebrate holidays, we do attend some services, and the hubby and I enjoy learning and studying about our religion. However, there are very few who really know us who would describe us as a devoutly religious family. That’s why it was a surprise to many when our son became very religious.
The hubby and I believed Blake’s fast journey to religious observance was OCD driven, with fear being the motivating factor. Blake contended that was not true; he professed that he was doing this out of desire and wanting to learn more. Still, he repeated prayers, he stressed about the way he observed, and he was overly punitive to himself when he made a mistake in observance. We consulted with mental health professionals and religious authorities to help separate out what was OCD and what was true observance. I embarked on learning more about my own religion in order to keep up with what my son was doing. We were welcomed by those who were more religiously observant and who graciously accepted Blake into their midst. It was a fascinating journey.
Still, although Blake found some happiness in being religious, I often observed that it seemed like torture. Instead of his finding meaning in his observance, he spent many nights awake, crying in despair because he couldn’t believe enough – couldn’t answer whether the Almighty was actually there, or whether he had completely changed his life in vain. The hubby and I were concerned that Blake’s flight into religion might eventually lead him on a path in the opposite direction.
And then, the confession…
It wasn’t a confession in the sense that people with OCD often confess. I mean, Blake didn’t come to us to clear his conscience or to get reassurance. One tortured night a couple of months ago, as he sat with tears in his eyes, he told us the truth that was in his heart.
“I don’t actually believe,” he told us, and then bravely proceeded to tell his religious mentors, who accepted his comments with various degrees of receptivity. The best response came from the mentor who told him that religion was not supposed to cause him despair and pain, and who reiterated that he will support him no matter what he does.
This week, Blake shared his most insightful revelation yet.
“It’s always been about OCD,” he told us. “It’s what so much of my depression is about. I’ve only practiced because OCD made me afraid not to. I’ve realized over the last several days that I’d rather not go on living this way.”
Of course, I immediately became fearful that this meant Blake was suicidal. So, I asked, and he assured me he was not.
“I just think something is wrong when religion makes you want to contemplate suicide,” he told me. “I like to think there is a G-d and that’s not what religion is supposed to do. I’m just not sure what I’m going to do yet. I just know I can’t keep doing what I have been.”
So what does one do when their entire religious practice, or most of it, has been based on OCD saying, ‘You have to, or something bad might happen?’ How does one proceed? Does one give it all up? Does one change things in increments? Blake is terrified to make any changes at all, and it’s because of that old familiar OCD anxiety. He’s terrified to feel the discomfort that comes from defying one’s OCD – and he’s stuck in this in between place.
“I feel like I went searching for G-d. I knocked on the door to his house, but he wasn’t home. Now, I feel like giving up. He knows where I am and he can come find me,” Blake told us, thinking out loud.
“Maybe you went looking in the wrong places or under the wrong pretense,” I suggested. “I can imagine that G-d wouldn’t have wanted you coming out of fear only. Perhaps it’s time for you to approach things in a new way. Maybe it’s time for you to stand up to your OCD and your fear. Maybe your job is to do the things that make you feel scared and anxious.”
“But it’s too scary,” Blake said. “I’m so nervous.”
“You’ve stood up to OCD fears before, Blake. I know you will again when you are ready.”
So my son sits, for now, in his in between space. He recognizes his OCD, knows he must do something different, but is still too afraid to act. The hubby and I support wherever he must be in this process. I can only imagine the difficulty of being where he is, emotionally. And I can only hope that he finds the courage to move forward soon.
Image courtesy of Stuart Miles at FreeDigitalPhotos.net
Just before we leave our latest therapy session, our therapist informs Blake he’s going to use a cliche’. It’s been a difficult few weeks, helping our son tiptoe toward better functioning. First there was getting up each morning at the same time. Next, it was about getting in the shower and getting dressed. Then came the difficult job of convincing Blake to choose an activity for himself – something that would get him out of the house, instead of falling back to sleep for hours upon hours.
In this session, Blake tells the therapist that he plans to apply for a job. It was his task since our last session to decide whether he wishes to take a college class or get a job. Blake names a local store that piques his interest, and then he does an amazing thing – he looks our therapist in his eye and gives him his word. I gasp silently.
“This is a big deal,” I say aloud.
“I know it is,” says our therapist. “Blake doesn’t give his word easily. I know if he does, he will stand by it.”
I admire that the therapist has picked this up about Blake. It’s a subtle thing that the casual observer would miss, but this therapist, with his many years of treating OCD has picked up that Blake’s scrupulosity, his need to tell exact truths, prevents him from promising or giving his word on nearly anything. (If that seems strange to the reader, I’ll sum it up that Blake’s OCD says he must be a good person and always tell the truth. Because there may be an unforeseen circumstance that may prevent him from keeping a promise or his word, Blake’s ritual/habit/compulsion is to not make any promises).
And then, it is quiet.
Our therapist pauses, strokes his chin, and notes that he’s now in an interesting position.
“There are fifteen minutes until our time is up,” he says, glancing at the clock. “So, you could let me know if there’s something you’d like to bring up, Blake. The alternative, which I don’t know if you’d like, is that I could ask your parents if there’s something they’d like to bring up…”
“Nope. There’s nothing I want to talk about,” Blake says, and looks in my direction.
“Oh, I do have something I’d like to bring up,” I say, somewhat too excitedly.
“What?” Blake wonders.
“You know, you have been sitting up late at night talking to me about how much despair you are in, how life seems to hold nothing for you, how awful you feel.” I look to the therapist and continue. “There are frequent nights of sobbing his heart out. And, as mom, I’m trying to listen, but there’s a limit to what I think I can do.”
The therapist nods and what ensues is a dance around whether Blake will share what he’s been going through with the therapist, whether he might trust him with his sadness, and the time constraints. In the end, Blake agrees he will meet with the therapist alone during the next scheduled session and at least answer a few questions for the therapist. But Blake is doubtful that it will be helpful.
“It’s difficult to imagine that there is any hope,” the therapist notes to Blake, and then, as we walk out the door, offers him what he promises will be a cliche’. “It’s always darkest before the dawn,” says our therapist.
*On the eve of the annual conference of the International OCD Foundation (IOCDF), which is taking place in Chicago, I am re-posting this entry from a while back. OCD is a serious disorder that can profoundly affect lives. Knowledge and treatment can make a world of difference.
This is a piece I wrote for myself about three and a half years ago – before I started writing this blog. It reflects the feelings I felt at seeing my son stuck in an OCD ritual, and my struggles with a public that often does not understand that OCD can wreak havoc on lives.
Image courtesy scottchan@freedigitalphotos.net
“Good morning!” I say in my most cheery voice as I open the car door and a load of kids tumbles out. I’m working at morning valet at my son’s school, a volunteer position I’ve helped with for the past four years. “Have a great day!” I wish them as they enter school for the day. Across the parking lot, I catch sight of my own son, standing by my car. I can make out the brown curls on the top of his head, which is bowed in prayer. I check my watch – 20 minutes have passed since he began this process. Twenty minutes on a prayer that reasonably ought to take less than five. I can see him repeating the same motions he’s done over and over already. I even think I can see him mouthing the same words.
“Enough already,” I think to myself and begin to walk in his direction.
“Be right back,” I tell my fellow volunteers as I leave my post. When I get to him, he doesn’t acknowledge me. He’s deeply, fervently in prayer.
Image courtesy David Castillo Dominici @freedigitalphotos.net
“Hon,” I ask, “can I help in some way?”
Absolutely no reply. His lips move at rapid-fire pace and he’s planted in place. I put my hand on his shoulder.
“It’s time to go in to school now,” I tell him.
“Mom! I was almost finished! Now I have to start it all over!”
“Honey, you’ve been saying the same prayer over and over for the last 20 minutes. It’s enough. Go join your friends before school starts.”
“I have NOT been saying it over and over. I keep messing up or skipping parts so I have to start again and get it right. I almost had it this time and you interrupted.”
“I don’t think the point is to get it perfectly right. I think it’s about what’s in your heart. You-know-who is just trying to trick you.”
I say this last part in reference to his OCD, which we’ve known he’s had since he was 7. He is nearly 14 now.
“Really? Do you think so?” he says sounding just a little bit hopeful.
“You know that’s the truth. Come on, you can fight this.”
“No, no, no. I have to get it right,” he says. “Just let me do what I have to do.”
“Come on, honey. Stop and go to class.”
“Mom!!!”
“Fine! It’s your OCD. You handle it the way you see fit.”
I throw my arms up in exasperation as I walk back to the waiting line of cars. He goes back to his prayers, trying to finish before he is tardy to class. My heart is heavy as I watch him being caught up in this cycle…trying to get it just perfect and falling short over and over again. I want to make this better for him, want him to be able to go hang with his buddies who are all together before school begins, but I am just an interruption to a process he feels he must go through.
Not long ago I saw a segment of an interview of Howie Mandel by Larry King. Larry was asking Howie about his OCD. At one point Larry looked at Howie and asked, “It’s not a severe mental illness, is it? I mean, it’s not depression.” Larry went on to talk about how we all have a little OCD and how he has all his vitamins and medicine lined up in a certain order and takes them in that order. Howie did his best to explain how OCD can severely impact someone’s life, but I never really felt that the point hit home.
I think Larry’s question reflects what we see in the media about OCD. People with OCD are portrayed as quirky, silly, and super organized. Maybe they are controlling and bothersome. What we miss seeing is the anguish and the suffering. We do not understand how OCD can hold an individual – and entire families – hostage to it. If we can ask the question, “It’s not a severe mental illness, is it?” then we have never witnessed a child with hands so bloody and oozing from over-washing that they wince with pain if anything brushes against them. We have not had a family hike interrupted by the un-ending screams of a child who is certain he is about to die because there may have been a Lyme disease carrying tick on the shrub that brushed up against him. We have never had a sheriff’s deputy come over to us in alarm because our child is screaming so horrifically that they sound like they are being torn limb from limb. We have never had a family meal interrupted over and over because our teenage son has to stop eating to repeat a ritual before he can go on eating. And we have never seen a 13-year-old boy reduced to an exhausted crumpled mass in his mother’s arms after fighting off the demon in his own mind.
“It’s not a severe mental illness, is it?”
Yes, sadly, OCD is a severe mental illness, and it attacks the things that are most precious to a person. People think our family must be very religious because they see our son in prayer all the time. What they do not realize is that the religion our son practices bears little resemblance to any religion we practice in the home – or that anyone practices anywhere for that matter. His practices are born out of a fear that OCD gives him – a fear that something awful will happen if he doesn’t get things just right. What used to be a source of enjoyment, connection and deep meaning for him – and for us all – has become a source of endless doubt and a cycle of torturous repetition that has long lost its original intent.
Yes, there is treatment. There are terrific, highly effective treatments – and my son is in treatment now. He has beaten OCD to a pulp in the past. With this relapse, he is a teenager, in the throes of puberty and determined to be independent of what Mom and Dad want for him. So we wait, with hope that the day will come that he will decide that he loves himself more than he loves fighting us. We wait for the day that he turns his strong-willed nature against the OCD that currently holds him in its grasp and moves toward a freer life. But it’s going to be one heck of a war when it comes because, yes, OCD can be severe – and it grows in strength over time. In the meantime, our family will be here, honing our skills so that we can back this boy up when he is ready to fight.
For more information and to find help, visit the website of the International OCD Foundation: https://iocdf.org/
Image courtesy Stuart Miles at freedigitalphotos.net
“Hey Mom, I’m in an exposure right now,” Blake informs me. He sounds just the slightest bit excited.
“Really?” I ask. “What are you in an exposure for?”
I’m curious about this statement. Blake hasn’t talked about “exposures” in years. Certainly I haven’t heard anything of the sort from him since he refused treatment for his OCD just over three years ago. Exposures are an integral part of evidence-based treatment for Obsessive-Compulsive Disorder. The person with OCD places themselves, often with the support of a therapist, in situations that would normally provoke compulsions/rituals, but chooses not to pacify the OCD by performing those compulsions. Gradually, the OCD sufferer adjusts and learns to cope with what might have previously felt intolerable.
“Today is a special day, religiously,” Blake tells me. “I don’t know if there are any special observances I should be doing beyond what I’ve already done. I’m feeling pretty anxious, but I’m not giving in to it. I’m allowing myself to tell myself that I’m doing the best I know how and that has to be good enough.”
I know this is tough for him. We’ve been held captive in the house, at times, with Blake paralyzed over not knowing how to handle some religious observance (he is more religious than the rest of our family, having embraced religion about five years ago. OCD loves to mess with that and his obsessions and compulsions often revolve around religion). I tell him that I recognize this must be tough and that I’m glad he’s happy he’s made the choice not to give in to his OCD this time.
Blake is still struggling with depression and having difficulty with motivation. His OCD lingers mostly in the background, rearing its head from time to time. Yet, at moments lately, I see mini breakthroughs. He is more willing to talk about feeling anxious – something he would have become furious about in the past if I would have mentioned it. Just yesterday I heard him repeating a prayer as I sat next to him.
“Are you supposed to repeat that prayer at certain times?” I inquire. “I notice you just said it a second ago.”
“No,” he says.
“Oh, it’s an anxiety thing?”
“Yep, it is,” he replies – with no defensiveness.
That little exchange would have been unthinkable even six months ago. Perhaps he’s a little more mature. Perhaps I’ve learned to be less intrusive, to have less of that accusatory tone in my voice. Whatever it is, this little window of openness is nice.
As for the exposure he self-imposed, we never spoke of it again, but I’m pretty sure it went well. He went off to babysit our friends’ children, came home later and proceeded with his day. There was no frantic calling of religious authorities or begging me to text someone who is in the know. Maybe that is how Blake’s war with OCD will be won, with little hand-selected battles he feels ready for. If so, I’ll cheer him on quietly each time he takes one on.
Image courtesy smokedsalmon at freedigitalphotos.net
Life in our family has been a whirlwind of late. College acceptances for Michael and trips to see those colleges; proms and graduation preparation; home-school adjustment for Blake (and for me). I have barely had time to sit down and think – not to mention sleep. And then, last night, everything came to a rapid crash.
The hubby and I came in just past 8:30 p.m after an early dinner with friends. Michael was out at a high school prom and Blake had stayed home alone. As we stepped in the door, Blake peered around the corner at us from the bathroom.
“You wouldn’t believe the night I had!” he exclaimed.
The right side of his face was red and bloody. A piece of his front tooth was missing. The bathroom floor was covered in vomit.
“Why didn’t you call us?” I asked. It turned out the accident had just happened. Blake was fuzzy on the details, but he’d fallen asleep, woken abruptly to let the dogs in the house, and had fallen, face first, onto the concrete in the backyard. He then proceeded to throw up before he could make it to his intended target, the toilet.
“We’re going to the ER,” I said.
“I need a tissue first. Where can I find one?” I told him where and he walked the opposite direction.
“Blake. That’s the wrong way.”
“Oh yeah.” He turned around.
When he returned, the hubby and I readied to head to the hospital.
“I have some prayers to say first,” Blake said.
Really? Prayers now? Even with a head injury, the rigid adherence to religious ritual. We waited.
At the hospital, the doctor confirmed what we thought – a concussion. It was a borderline call as to whether Blake needed a CT scan. Blake did NOT want his head irradiated. That meant we would be waking him every one to two hours all night. Blake was just fine with that. The hubby was posting the photo of Blake’s scraped-up face on Facebook.
“You’d better call your mom if you’re gonna post that,” I said, “or someone else is going to tell her first.”
Sure enough, my sister-in-law contacted me soon after the post appeared. I shared the details with her, right down to the prayers that delayed our leaving. My sister-in-law is religious – one of Blake’s guides and reality checks for OCD vs. real religious practice.
“Prayers?” she wondered. “What prayers did he have to say?” Of course, she informed me of what I already knew – the prayers could have waited. “Happy Mother’s Day!” she said. Happy Mother’s Day, indeed.
Image courtesy Stuart Miles @ freedigitalphotos.net
What?! Being polite is OCD? Now that just can’t be right. That has nothing to do with being a neat freak. Yes, yes. I’m invoking the OCD stereotype. I’m doing it for a reason and that is that sometimes OCD can present itself in ways that people would not recognize as OCD. Even people who have OCD sometimes don’t initially recognize some of their symptoms as being OCD. That’s because many OCD symptoms can present in ways that are far, far away from the stereotypes people often have of OCD sufferers being neat, organized, germaphobes who go around checking that the stove is turned off. It can sometimes present in the form of one very polite and seemingly grateful individual.
I started thinking about OCD and politeness after I read Janet’s post on “OCD and Apologizing.” She wrote about how apologizing could be an OCD compulsion, a true expression of remorse, or any number of other things. Usually we think of an apology as a positive thing, but, at times, it can be something else entirely.
As I read her post, I recalled a time when Blake did something that would normally be seen as a welcome expression: he thanked people. That should be good, right? Well, imagine this. We’d go to a restaurant. The server would give him water. Blake would say, “thank you very much.” The server would give water to Michael. Blake would say, “thank you very much.” The server would give my hubby and I water. Blake would say, “thank you very much” twice more. The host would seat another family. Blake would say, “thank you very much.” Are you getting the picture? Blake incessantly thanked others, even for things that had nothing to do with him. It became maddening to me and I dreaded hearing his next “thank you very much.”
So How is Saying “Thank You” a Symptom of OCD?
I am often complimented on what a polite young man I have. I am proud of him for being appropriately polite. It is a wonderful thing to have a flight attendant, a teacher, or another parent notice that your child has good manners. Saying “thank you” for the purpose of being polite and respectful is one thing. Saying “thank you” incessantly because you fear that maybe you weren’t respectful enough, thankful enough, or kind enough is something else entirely.
And that was exactly the case for Blake. He felt like a terrible person if he missed the opportunity to say “thank you.” He became incredibly anxious if he thought he hadn’t been thankful enough. It started with just saying thank you for things for himself. That wasn’t enough for his OCD, though. It moved on to saying “thank you” for things that others did for the rest of our family, and it continued right on growing as he had to say “thank you” for any kindness that he saw being done for anyone within eyesight. He had to be constantly vigilant. He had to be ready with his “thank you’s.” That’s not politeness; that’s private torture. That is OCD.
What to Do When the Problem is “Thank You?”
My hubby and I grew weary of constantly being thanked. We felt like the most ungrateful parents in the world. Imagine explaining to other parents – or to teachers – “Our son says ‘Thank you’ too much.”
Luckily, or perhaps understandably, Blake’s therapists understood what all this thanking was about. It was scrupulosity, which, before then, I had thought was just about OCD playing itself out in religion. They explained to me that it also is about worrying that one may have committed a moral sin or violation. Blake was worried about not being perfectly moral. Therefore, he had to be perfectly thankful. What could be done about this?
Well, in keeping with the principles of Exposure and Response Prevention (ERP), a very effective treatment for OCD, Blake needed to be in situations where he’d be tempted to say “thank you” and not be able to perform his ritual. That is, he had to let people do nice and considerate things for him without saying thank you. I remember during that time that we had assignments to go out to eat and Blake was not allowed to thank servers for anything they did for him (or for anyone else). When it was our family, in private, his exposures pushed back at OCD a little harder. Not only would he not thank us, he was directed to be un-thankful.
“I do not appreciate this,” he would say to us. Perhaps it would be, “I am not grateful that you’ve done this.”
It was actually kind of funny, and we had some fun as a family being ungrateful together. The thing is, when you can poke at OCD and find some humor in it, you can conquer it. Very soon, this OCD symptom was a thing of the past. Blake’s therapists were not completely done with him on this one, though. A person cannot go on forever not expressing thanks or gratefulness. I guess they could, but there is something to be said for being polite, and it’s not good to be a young teen who never says a thankful word. The problem was in giving him back his ritual words too soon. What if he started saying, “thank you” again and went right back into OCD mode with them?
When it came time for expressing gratitude again, the words “thank you” were banned from Blake’s vocabulary. He had to find more creative, thoughtful ways of expressing his appreciation.
“I really appreciate this.”
“That was so nice of you.”
It took a new kind of creativity to find words and ways to say, “Thank you” without actually uttering the words. Ultimately, Blake was able to go back to expressing thanks in whatever way he wanted to. The anxiety around not being perfectly thankful was gone.
In answer to the question I posed at the beginning of this post, yes, being polite can be a form of OCD. First, there must be some sort of intrusive or upsetting thought that a person cannot seem to be rid of that focuses on a fear of not being polite enough or good enough (or something similar). In answer to that, the person feels pressure to behave in polite ways. This is how they relieve their anxious feelings. In many cases, the initial ways of being polite won’t be enough and the person will have to keep adding more to their routine. Sadly, there isn’t true gratefulness behind this kind of politeness. It is an expression motivated by fear and discomfort, and it robs both parties of the opportunity for a real and connected exchange.
I found this piece of writing the other day. It is something I wrote for myself about two years ago – before I started writing this blog. It reflects the feelings I felt at seeing my son stuck in an OCD ritual, and my struggles with a public who often does not understand that OCD can wreak havoc on lives.
Image courtesy scottchan@freedigitalphotos.net
“Good morning!” I say in my most cheery voice as I open the car door and a load of kids tumbles out. I’m working at morning valet at my son’s school, a volunteer position I’ve helped with for the past four years. “Have a great day!” I wish them as they enter school for the day. Across the parking lot, I catch sight of my own son, standing by my car. I can make out the brown curls on the top of his head, which is bowed in prayer. I check my watch – 20 minutes have passed since he began this process. Twenty minutes on a prayer that reasonably ought to take less than five. I can see him repeating the same motions he’s done over and over already. I even think I can see him mouthing the same words.
“Enough already,” I think to myself and begin to walk in his direction.
“Be right back,” I tell my fellow volunteers as I leave my post. When I get to him, he doesn’t acknowledge me. He’s deeply, fervently in prayer.
Image courtesy David Castillo Dominici @freedigitalphotos.net
“Hon,” I ask, “can I help in some way?”
Absolutely no reply. His lips move at rapid-fire pace and he’s planted in place. I put my hand on his shoulder.
“It’s time to go in to school now,” I tell him.
“Mom! I was almost finished! Now I have to start it all over!”
“Honey, you’ve been saying the same prayer over and over for the last 20 minutes. It’s enough. Go join your friends before school starts.”
“I have NOT been saying it over and over. I keep messing up or skipping parts so I have to start again and get it right. I almost had it this time and you interrupted.”
“I don’t think the point is to get it perfectly right. I think it’s about what’s in your heart. You-know-who is just trying to trick you.”
I say this last part in reference to his OCD, which we’ve known he’s had since he was 7. He is nearly 14 now.
“Really? Do you think so?” he says sounding just a little bit hopeful.
“You know that’s the truth. Come on, you can fight this.”
“No, no, no. I have to get it right,” he says. “Just let me do what I have to do.”
“Come on, honey. Stop and go to class.”
“Mom!!!”
“Fine! It’s your OCD. You handle it the way you see fit.”
I throw my arms up in exasperation as I walk back to the waiting line of cars. He goes back to his prayers, trying to finish before he is tardy to class. My heart is heavy as I watch him being caught up in this cycle…trying to get it just perfect and falling short over and over again. I want to make this better for him, want him to be able to go hang with his buddies who are all together before school begins, but I am just an interruption to a process he feels he must go through.
Not long ago I saw a segment of an interview of Howie Mandel by Larry King. Larry was asking Howie about his OCD. At one point Larry looked at Howie and asked, “It’s not a severe mental illness, is it? I mean, it’s not depression.” Larry went on to talk about how we all have a little OCD and how he has all his vitamins and medicine lined up in a certain order and takes them in that order. Howie did his best to explain how OCD can severely impact someone’s life, but I never really felt that the point hit home.
I think Larry’s question reflects what we see in the media about OCD. People with OCD are portrayed as quirky, silly, and super organized. Maybe they are controlling and bothersome. What we miss seeing is the anguish and the suffering. We do not understand how OCD can hold an individual – and entire families – hostage to it. If we can ask the question, “It’s not a severe mental illness, is it?” then we have never witnessed a child with hands so bloody and oozing from over-washing that they wince with pain if anything brushes against them. We have not had a family hike interrupted by the un-ending screams of a child who is certain he is about to die because there may have been a Lyme disease carrying tick on the shrub that brushed up against him. We have never had a sheriff’s deputy come over to us in alarm because our child is screaming so horrifically that they sound like they are being torn limb from limb. We have never had a family meal interrupted over and over because our teenage son has to stop eating to repeat a ritual before he can go on eating. And we have never seen a 13-year-old boy reduced to an exhausted crumpled mass in his mother’s arms after fighting off the demon in his own mind.
“It’s not a severe mental illness, is it?”
Yes, sadly, OCD is a severe mental illness, and it attacks the things that are most precious to a person. People think our family must be very religious because they see our son in prayer all the time. What they do not realize is that the religion our son practices bears little resemblance to any religion we practice in the home – or that anyone practices anywhere for that matter. His practices are born out of a fear that OCD gives him – a fear that something awful will happen if he doesn’t get things just right. What used to be a source of enjoyment, connection and deep meaning for him – and for us all – has become a source of endless doubt and a cycle of torturous repetition that has long lost its original intent.
Yes, there is treatment. There are terrific, highly effective treatments – and my son is in treatment now. He has beaten OCD to a pulp in the past. With this relapse, he is a teenager, in the throes of puberty and determined to be independent of what Mom and Dad want for him. So we wait, with hope that the day will come that he will decide that he loves himself more than he loves fighting us. We wait for the day that he turns his strong-willed nature against the OCD that currently holds him in its grasp and moves toward a freer life. But it’s going to be one heck of a war when it comes because, yes, OCD can be severe – and it grows in strength over time. In the meantime, our family will be here, honing our skills so that we can back this boy up when he is ready to fight.
Blake had a milestone event of sorts just a little over a week ago. He left the school that has been his home for the last five and a half years. It is a local charter school that we chose to enroll him in when he began the fifth grade. Back then we could see the writing on the wall – the local junior high school and Blake would not be a good match. A project-based learning charter school seemed a much better way to go for our bright, anxious boy. He could have remained there through high school graduation, and we all imagined that he would. Yet Blake’s growing religious observance clashed with the secular atmosphere. He asked us for over a year to allow him to move into a home study program, until we finally agreed, but was it the right move?
Blake began the journey toward becoming more religious about three and a half years ago. He started small, a little change here and there. At the time, he had been managing his OCD incredibly well. We barely saw any sign of it, and we would rejoice when he made choices to do the opposite of what OCD told him to do.
Then, things changed. Blake’s OCD made a strong comeback. He knew what to do and he reached out to his therapist to coach him. Yet, despite making regular plans of action, Blake didn’t follow through. He gave in to his anxiety. His compulsions around his contamination fears grew, but OCD wasn’t done there. It found Blake’s newly growing interest in religious observance the perfect area to attack. Blake was already uncertain about whether he was practicing his religion correctly, and his OCD dug right in.
“Maybe you didn’t say that prayer right. You should say it again,” OCD would taunt him.
“You may have just done something to offend something sacred. You’d better undo it.”
Religion and OCD became entangled and it became difficult to tell one from the other, at least for those of us at home. To people on the outside, Blake just looks like young man of “a deep and reverent faith” to quote one of his teachers. When people learn that Blake is more observant than the rest of the family, my husband and I often receive praise for being so supportive of our son. I received much positive feedback as Blake wound down his final week of school, but I felt like a sham. I am not who these people think I am.
Image courtesy Stuart Miles @freedigitalphotos.net
For the last five and a half years, Blake has been nurtured by educators who have strived to understand his OCD. He has been welcomed by resource specialists who’ve listened patiently to his anxious moments. He has kept warm company with the health office attendant – sometimes for hours on end and for days in a row. Never once has anyone suggested that this young man, initially unable to even sit in a classroom, didn’t belong at that school. No one ever tried to send him home like they did at his former school, because he was wearing the nurse down. No one called home or sent him to the principal because his repetition of prayer sent him late to his first period yet again. They accepted him as he is. And they told me that I am a good mother for supporting his growing religious needs.
So, why do I feel like a sham? Because deep inside, I’m not sure if this is really religious observance. Sure, it looks like it on the surface, but it’s still too tangled up with OCD’s need for a black and white design for living for me to know if it’s genuine, or if it’s OCD. Did I just pull my son out of one of the most wonderful and nurturing experiences in his life in the service of his OCD? Or did he really grow into a religious young man with different needs? I don’t know if we made the right decision. I don’t know if I gave in because I was tired of fighting, or because it really was time for Blake to go in a new direction. All I know is that I am uncertain right now, and I miss the home that was my home, too.
I’ve written about prayer on this blog a number of times. That’s because my fifteen-year-old son, Blake, has a form of OCD called Scrupulosity. Basically, his biggest concern is following religious rules perfectly – even over the top – to avoid making a “mistake” or offending the Almighty. He has other OCD symptoms, as well, including contamination fears (just try to get him to hold a dollar bill), but it is the rigid adherence to “his” religious rules that are so difficult for our family. I call them “his” religious rules, because they truly are his alone, and they defy what I was taught, and continue to learn, about religion.
A few days ago, our family decided to join friends at the horse races. It is something we have never done together before and Blake and his older brother, Michael, were well aware of our plans.
“Be all ready to leave the house at eleven am,” we told them both the evening before.
The best laid plans, however, do go astray. I woke Blake at nine am, knowing he has a series of rituals he feels he must do in order to get out of the house. He got out of bed and headed into his bathroom to shower – or so I thought. At 9:30, he was fast asleep again. I woke him again. He promised to get ready. At 10:00 am; he was still asleep. At some point, he managed to shower and dress, but he couldn’t seem to leave his room. My husband and I found him planted on the floor in front of his space heater. We took the heater away.
At this point you are probably noticing that we’ve got more going on here than OCD. You would be correct. We’ve also got a young man who doesn’t follow directions and a mom and dad who are trying to learn the best way to correct this issue. The point is, though, this delay in getting ready created the perfect OCD/Scrupulosity storm because by the time Blake finally made it downstairs, it was time to leave. But, WAIT, he hadn’t said his morning prayers!!! As we got into the car and drove away, I noticed that Blake had a prayer book tucked under his arm.
When we arrived at the track, Michael, the hubby, and I all got out of the car to meet our friends. Blake got out of the car, prayer book in hand (and some ritual items, too). It’s a big prayer book, by the way.
“Blake, the prayer book doesn’t belong at the race track. Leave it in the car,” I directed him.
“But I haven’t said my prayers yet. I have to say them NOW!”
“How long will that take?” the hubby asked. “Maybe you can do it here at the car and then we can go in.”
“Twenty to thirty minutes.”
“No,” I say. “Our friends are waiting for us. It will have to wait until we are finished for the day.”
“That’s not going to work,” Blake insisted. “I have to say the prayers now.”
“Blake,” I say – and I was getting angry – “you had the opportunity to say your prayers at home. You had two hours before we left the house. If your prayers were that important, you would have taken the time to complete them at home instead of going back to sleep. Now we have friends waiting for us. Put the prayer book and everything else back in the car. You can say your prayers when we leave.”
“That’s not going to work,” he insisted.
My hubby reinforced the notion that prayer books do not belong at the race track and that he must wait until we were finished. Blake continued to hold his ground. I lost my temper, told him he could just stay at the car all day, and walked toward the track entrance. Hubby stayed at the car and tried to talk some sense into Blake. Michael hesitated, not sure where to go. I could imagine the thoughts in his head.
“Gee, another family outing ruined by OCD…”
I turned back to see the hubby gesticulating wildly with his arms. The movements got bigger and bigger. I don’t know if I’ve ever seen him get this angry with either of our boys. It wasn’t going well.
A few minutes later, the hubby and Blake came walking toward us. Blake had the prayer book and all his paraphernalia. It was obvious who’d won this one. I was furious. I started to speak, but the hubby just motioned at me to continue toward the track. I fumed silently for nearly half an hour.
Our day ultimately turned out well. That is, we all enjoyed our time with our friends at the track. But beneath it all, OCD lurked. Combine teenage lack of responsibility with the unyielding rules that prayer absolutely, positively must happen by a certain time (and in a certain way) or the skies may fall in and you have the potential for high conflict. Blake was willing to spend the whole day in the parking lot by himself in the name of the prayers that HAD to be said, and to let down the rest of his family members and our longtime family friends. What troubles me more, he saw no problem with his behavior.
I think our family will need consultation with one of our religious mentors. I can understand that prayer is important, but I don’t think that it is so rigid that it would have us not meet our obligations to friends and family. To me, those are what we must nurture in life. We will see what the religious experts say.
OCD In The Family 